Chemotherapy round 4 day 8

I just put V to bed for the night.  She is doing pretty well.  This round is all new to us.  It is the first "high dose" chemo.  We came in early last Monday, and Violet got her hearing test.  They check her hearing before every round because the chemo can affect and damage hearing.  The tests came back perfect.  Then she had a limited MRI. I know I had mentioned earlier that Violets neurosurgeon noticed an area of her brain that he wanted to monitor.  Basically, the way that he explained it to us is that the area of the brain called the ventrical is a void where spinal fluid flows thru, it has a valve that opens and closes to allow spinal fluid in and out.   He believes that one of Violets valves was damaged by her brain tumor, and that now it traps spinal fluid so it isn't opening to let the fluid back out appropriately.   So hes concerned that it is causing pressure, and that he may need to go in and open that area up at some point. But that he saw no evidence of tumor, which is great news.  He asked us to get the limited MRI pictures to check on that valve before this round.   The pictures showed some improvement, so he felt comfortable for us to move forward with chemo.   We will have another limited MRI on the 3rd of June to check it again.   My standpoint is, clearly I don't want her to face another neurosurgery, but this one to repair the valve would be very minor, and he may not have to do anything at all.  It may heal on it's own, which would be awesome.  I love watching how Violet interacts with our neurosurgeon. After everything she has been thru she has a slight anxiety when it comes to anyone in a white coat, but she seems very calm and loving with him.   Its like she knows that he literally saved her life by standing over her for 16 hours tirelessly operating to get that nasty tumor out.  I think she recognizes his voice as he must have talked to her a lot while she was asleep during surgery.   Anyway, it's amazing to see the bond between them.

So, we got two new chemo drugs Monday and Tuesday.  One of the drugs require baths every six hours around the clock for four days.  So, she got baths day and night at ten and four.  By day four I was so completely exhausted as there was no sleep with this schedule.  But, I was amazed at how well our girl tolerated them.  She cried a bit everytime but always cooperated.  It MAY have helped that she had male nurses all four days that were very sweet to her.   She's a flirt:)   On Thursday she got her rescue stem cells that they collected way back at round one.   I was very excited as they brought them in, it felt like we were doing something awesome.  I like that they call it a rescue and that it is literally Violet rescuing herself with her own cells.   When they hooked her up to get them they told me that the cells are kept in a preservative and that it smells bad.  THEY WERENT KIDDING.   Think rotten creamed corn.  Our room reeked for a good 24 hours after.  You could smell it down the hall.  After the stem cell rescue she had to sit and have heart monitors and blood pressures every 15 minutes for 6 hours.   She did so great, and was so patient and still.

Now her cells have started kicking in and all her counts are super high, but the chemo hasn't attacked yet.  So, we are just waiting for that.  Her chemo will kick in at some point this week, knocking her to zero, leaving her weak and prone to illness and fevers and infection which can be very serious.   Then her rescue cells will fight back bringing her counts back up and we will get to go home.  Theres no knowing how long this will take, or how bad it will get.  But in the meantime she is fairly happy, eating well, and playful.  Its the calm before the storm.

She amazed us one day as we were walking the halls and her doctor saw her and said "Hi Violet, how are you?"  To which our little genius replied "Hi, I'm nauseous"   My jaw and the doctors hit the floor.   Did she just say nauseous????  She listens to everything here, and is learning all the medical lingo.  It's incredible and kinda sad.  She says heparin, (one of her meds) and nauseous and chemo, and helps the nurses thru every step of her care.

Among all the stress of Violets illness and care, we are moving this weekend.  It has been hard but with the help of my family and dearest friends we were able to get our apartment packed before we came to the hospital.  Moving is a huge stress but we are soo beyond grateful for all the help we have received and volunteers to help Saturday.  There is no way we could do this without you.   We were unable to stay where we are now as we cant afford it anymore with me not able to leave V to work and with all the medical bills.  But Charlies Mother and step father very lovingly are letting us rent a home from them, and the payment will be better than where we are now.  Charlie will be able to walk to work if he needs to, which is good as a few weeks ago his car completely quit on us with engine trouble.   We were able to find a very cheap car that is ugly as sin but mostly runs to get us  by for now.  But needless to say we have had a lot going on and lots of added stresses.  I lay in bed every night before I go to bed and think about all the things we have to be grateful for and all the love and support we have.  Beyond grateful to all of you.  This experience has definitively taught me what is important.  We have no money, and have to move and have cars that barely run, but we have a beautiful little girl, and the most amazing support system anyone could ask for.  Thank you to everyone reading this for all the love and support

Every round we meet new families, which is hard as you see more and more children get diagnosed and face this scary journey.  We have had several families that have reached back to help us when we were diagnosed, and they have been incredible support and guides.  The Bish's the Wellings, and Erika Decker were my amazing helpers when I wasn't sure I remembered how to breathe, and I have tried very hard to pay it forward by introducing ourselves and reaching out to new families.  Violet continues to make new friends.  She is thrilled that her sweet William is here with us this round.  Tonight in the playroom Violet took William by the hand and just gazed up at him as they walked around and around together.  William is quite a bit older than her, and is very big brotherly looking out for and protecting her.   She calls him MYLiam.  He got her a pop up play tent at a carnival his last admission and saved it this whole time to give to her.  She looks for him everywhere and worries when she hasn't seen him all day.   She hadn't seen him in several days and kept asking for him and I told her he wasn't feeling good so she took my mom to his door and wanted to put a heart sticker on his window for him. :)  One thing I can say is that this experience has created bonds I know we will keep for life and we all look out for eachother like family.  Despite all the fear and stress and how horrific this has all been we have found so much light from all the incredible people in our lives.  Thank you so much for your continued love and support.  Lots of love

Home and day of MRI scan

 Violet and Daddy meeting some of the OSU mens basketball players who came to visit the oncology patients.  Such sweet guys, Violet refers to them as friends anytime she sees this pic.

 Cuddling with her baby, and visiting with our dear friend Cindy Bish.  We LOVE Cindy

 Violet, Mommy, our sweet friend and fellow oncology patient Sam and the Columbus Blue Jacket players who are Violets new friends.  Love her face in this pic.

 My sweetest, cuddly girl.

 Art therapy, painting with spaghetti.  She always amazes me with her artist talent.

 She has Daddy wrapped around her little finger, she talked him into pushing her around in her baby doll stroller.  So funny

 We adore the nurses on the 12 floor.  Violet is so into her dolls.   The nurses took her dolly down to the nurses station and all put masks on and performed "surgery" on doll, as Violet looked on to give her "tubies" just like Violet has.  Violet was BEYOND thrilled that her doll looks just like her, and she can care for her baby while they are caring for her.  So impressed with the care and love of all of our nurses.

These are the children of a very dear friend who lives in Dubai.  They did a cancer run as a family and carried a sign they made in honor of our Violet.  Violet has GLOBAL support.  I am moved beyond words.

We were released Sunday morning from the hospital after a 17 day admission, for round three.  Violet was so excited to put her regular clothes back on and her sparkly twinkle toe shoes.  She danced down the hallway out of the hospital singing about going home.  The third round went fairly well, although for whatever reason as I mentioned before I think it was very emotionally hard for me.   But, we are half way thru!!!!!  Only three more rounds to go.

We are so loving being at home.  We sleep with the windows in our bedrooms open at night, and Violet sleeps so peacefully in her bed, almost 12 hours a night.  We have had lots of play time outside, lots of walks and exploring.  Loving the warmer weather.

Today we went back to the hospital for a very detailed brain and spine scan.  I was a nervous wreck.  Violet hasn't had a detailed scan since before brain surgery.  I knew this was a big day, as I knew they wanted to make sure the brain tumor wasn't returning, and that they had really gotten it all out in the first place, it was another make or break day.  Because the scan is so detailed it takes two hours to complete.  So Violet needs to be sedated, which meant she wasn't allowed to eat anything last night or today.   We got up to the hospital early this morning to go to clinic to make sure her blood counts were stable enough to do the MRI.  Her counts were good, and she was so cooperative and pleasant for a little girl who woke up way too early and had a completely empty stomach.  After we got the all clear there we went down to the surgical prep area, and checked in.  We put her back into the hospital gown and waited.  She fell asleep in my arms and shortly after, they came to take us down to MRI.  Anyone who has any dealings with Childrens knows that nothing is ever on time.  We ended up waiting for her MRI for an hour and a half.  She started to really lose it, rightfully so, as she was exhausted and starving.  I was beside myself with worrying and exhausted from trying to keep her happy and entertained.  They finally came to take her and I just can't describe that feeling, of handing her over.  It is one of the worst parts of this.  But, they took her back and put her to sleep and Charlie and I went to get some food.  I was sobbing, almost sick.  And my amazing Momma showed up to support us.  We all had lunch together and waited to hear that she was done and in recovery.  It was another day I'm not sure I could have made it thru without my Mom.  She is amazing and I am so grateful.  After about two and a half hours we went and waited with all the other basketcase parents in the surgical waiting area.  As soon as she started to wake up they took us back to her.  There she was my strong, brave little princess in her cage bed, sound asleep, snoring softly.  They told us that she was still pretty tired and just to let her rest for awhile longer.  She was all wrapped up in snuggly blankets and looked so sweet.  We did our best to leave her alone, but after about twenty minutes the nurses gave us permission to talk to her and try to rouse her a bit.  She opened her eyes but they were crossed and she was still pretty out of it, I stepped into her line of vision and said, "Hi girlfriend, it's momma, I'm here"  She immediately tried to sit up and reach for me.  Melted my heart.  I picked her up and we all loved on her and kissed on her and then the nurse came into check on us.  She called up to let our oncology doctor know we were running WAAAAY late to our appointment with her to go over the MRI results.  Then the phone in our room rang, know let me take this oppurtunity to go back a step.  The day Violet was diagnosed was by far the worst day of my life, it was horrifying.  I took Violet up to childrens for a ct scan and NONE of us thought that it was going to result in anything, it was just a precaution.  So, I drove her up there, and they did a super fast ct scan.  I picked her up and told her we could go home and take a bath and get lunch now, and the technician said, if you can just follow me back here you have a phone call.  So, I ignorantly followed her back with Violet in my arms and there was a phone ringing.  I answered it with a smile and said hello, on the other end was our pediatrician.  She said immediately "I'm so sorry, Violet has a massive brain tumor, she is in serious danger I am sending a neurosurgeon to you right now."  I was DEVASTATED, and to say I was shocked was a huge understatement.  So today, waiting in that little room holding my girl, when the phone on the wall rang, I immediately got a HUGE pang of terror, I got an instant headache and started shaking.  Charlie answered it and said the doctor wants to know if it's okay to give results over the phone.  I could barely speak, I was so afraid Charlie was going to have that same moment of having our lives change forever AGAIN over a phone call.  This whole experience has made me hyper aware.  I scan faces and evaluate tones in voices in a millisecond.  I was studying Charlies face and body language immediately, I looked at my mom shaking and scared and said "this is really bad, it's bad, I know it's bad"  Charlie looked up at us and said "doctor says the brain and spine look good"  Anyone who REALLY knows Charlie knows....he is mellow....like scary mellow and pretty hard to read most of the time.  He was on the phone after that for what felt like ages, with no facial expression what so ever.  Just nodding and saying yes, I understand.  He hung up and said that the doctor said the scan came back clean, that there was a pocket of fluid where the tumor had been, that they are going to continue to monitor, her brain is still healing and trying to figure out what to do with the void that the tumor left, but that Violet looked good.  YAYYYYYY!!!!!!!!! I could have danced allll the way home.  We got her dressed and we walked back to the parking garage outside per my request.  I feel like today is the first time I really felt the sun again.  So tremendously relieved and grateful.  Violet is sleeping now.   I think we will all sleep well tonight.

I want to say yet again, how grateful we are.  To all of you.  I could never dream of getting thru this without all the love and support.  Thank you to our dear friends who have brought over food, it helps so much more than you realize.  Thank you for sharing our story, thank you for caring, for the prayers and well wishes, thank you for the donations, without which we wouldn't have gas to get V to the hospital for her appointments, or food.  Thank you so much to our families.  I am so moved by all the love and encouragement we have gotten.  I can't wait till Violet is older so that I can help her understand how loved and cared for she is.  Tonight we are so very grateful, for a clean scan and for all the love we have in our lives, and mostly for all of you.  Thank you soooooo much, lots of love.

Chemotherapy round three day thirteen

First and foremost, I'm sorry.  I'm sorry I haven't posted any updates to the blog in so long.  I feel very guilty that we have so many people who are interested in what's going on with our sweet girl and check the site frequently and who I am sure are disappointed by not having any recent information.  So, I am very sorry.  I have made it a goal to update the blog several times a week moving forward.  I am so grateful that we have so much support and interest, and I apologize for not showing that gratitude by posting more often.

V is doing well, we are drawing near the end of the third round of chemo.  Violet is currently standing in front me dancing, eating French fries.  She is amazing.  This round has been, dare I say the smoothest so far.  This rounds chemo drugs were the same as the previous two rounds.  But the doctors and nurses told us that each round she would probably respond differently.  She seemed to manage very well.  She still had some nausea and vomiting in the first week, but not as severe as before.  She also managed to eat all thru out this round which she hadn't done previously.  As a result she has maintained a good weight.  She has stayed happy, and funny through out.  She is currently waiting for what they call count recovery before she can go home.  As I had explained before she gets the chemo and after the nausea and vomiting they check her blood counts daily and approximately a week to ten days after the chemo is administered she loses all her white blood cells, which means she has no ability to fight infection or illness of any kind.  This is where my being a germaphobe has come in handy.  I wash her hands religiously and I am very careful about all her exposure.  I am afraid I have probably hurt some feelings unintentionally as I ask for no visitors while she has no immune system,.  I just have to protect our little princess.  MOST children in this phase of zero white blood cells develop a severe fever, around 105 and they are put on antibiotics, some of them even end up in the ICU.  We have so far managed to avoid all of that.  I am very grateful.

Oh, also....big news.  We got her genetic testing back and our beautiful girl came back NEGATIVE.  Which was a huge relief, and a game changer.  Her doctors said they feel pretty confident about her having a positive prognosis as a result.  Which made me cry with relief for days.  Unfortunately a lot of little ones with Vs type of cancer test positive for this mutation and end up having to face a second form of cancer in addition.

So, at this point we are days away from being thru this third round, making us officially half way thru her chemotherapy plan.  She has three more rounds remaining.  The first free rounds that we have already done are what they call standard chemo, and they were no picnic.  But the last three upcoming rounds are what the doctors refer to as high dose chemo.  She will be in another wing of this floor where there is less traffic and we wont be able to open our door or leave the room much, because she will be even more fragile and we have to be even more careful and isolated.  She will be receiving two new chemo drugs we haven't had yet.  One of them requires her to get a bath every six hours as it seeps thru the pores and can cause chemical burns on the skin.  The second is another one that will probably cause tummy issues.  These drugs also carry the potential of causing mouth sores which we haven't seen yet.  But, we have heard that they are pretty awful.  I am very anxious about the next rounds.  So she will receive the two new to us drugs over two days with baths every six hours, for the first few days and then on day four she will receive her stem cells back that they harvested way back in round one.  That was the process where they put the giant port in her leg and harvested her blood and collected stem cells,  well those stem cells are currently frozen at OSU waiting for the next three rounds when our sweet girl will desperately need them to as the doctors say rescue her, as her recovery will be very rough and her immune system and blood counts will plummet.  I am very unsure what to expect, but I am scared.  The last three rounds have not been easy, and I am very intimidated to hear that the next three will potentially be worse.  The good news is with our negative test result on the genetic test, once Violet is done with the next three rounds of chemo we will get to ring the last chemo bell symbolizing being cancer free and done with treatment.  We will just be coming back every three months to have brain and spinal scans to watch for a relapse.  Once we get thru the first year, the scans will become less frequent.

I have to be honest part of the reason that I haven't been writing is that I have definitely been really struggling emotionally.  I know it sounds bizarre but I feel like I am just now starting to really process and deal with all this.  The first three months I was literally a zombie and was just making the motions, I told mom the other day, I don't even remember the first few days after her diagnosis.  Now, the reality is starting to set in for me.  Realizing this is our new life.  Violet is growing up in a hospital, she is learning to walk in hospital halls, she is learning to talk.  Some of her first words were
"owie" and "please no" she knows all about heparin and tubies and owies and doctors.  It hurts my heart.  I find I am grieving for the normal childhood she deserves.  I am doing my best with the help of the amazing staff here to find any fun where we can but I am so heartsick over holding her down while she cries and we have to do painful procedures.  I desperately wish I could help her to understand why we are doing all of this.  Despite how hard it has all been, and despite all the many owies my brave girl has taken she always recovers and laughs and plays, and hugs and forgives, and sings.  It has been so hard for me to be so isolated up here.  I worry about Violet as well sometimes, until I see her befriending her nurses and fellow patients.  She truly has helped mommy thru this.  I am so grateful to be her Mommy, to get to spend this time with her, everyday, watching her develop and grow.  She is a marvel.

I came into this round very down, I cried all the way back up to the hospital.  I wasn't sure how to put one foot back in front of the other to do this again.  It was so much easier to be locked up here thru the long winter, now waking up to beautiful days, watching kids in the park below us playing hurts me.  I suppose it will just make us play harder on the days we are out.  It makes the sun feel warmer and the air a little sweeter when you haven't seen it or felt it in so long.  So, if you have the chance go out, put your face up to the sky for me and V and feel the sun and marvel in it for just a minute.  Hug your babies tight and never be the first to let go when they hug.

I am only able to get thru this by concentrating on all that we still have.  And its so much.  I am so grateful for all of the support from everyone.  All the cards, prayers, thoughts, hugs, food, texts, calls.  It helps soooo much.  I will be updating again tomorrow with a better idea of when this round will be done and I can take my girl out in the spring air again.  Until then, thank you for reading, and for caring, and please accept my apologies for not updating more.  Lots of love, and goodnight.